Navigating the medical system can feel overwhelming, especially with multiple health conditions. Sometimes, I think of my body as a row of dominoes, with one system affecting the next system until they all fall over. Over the years, I’ve learned some strategies to simplify this process and make it more manageable. I delegated my mom (you can pick whoever) to be my care coordinator so I could take care of my health as best I can.
Here’s how my mom has helped me make working with the medical system easier, and I hope these tips can help you too.
1. Build a Strong Healthcare Team It took years to get a reliable healthcare team that was willing to look more carefully at my complex body conditions. We finally have our specialists: primary care physician, endocrinologist, nephrologist, neurologist, pain psychiatrist, urologist, and other specialists all within one medical system. That makes it easier for everyone to work together and have access to details of my records. It’s important to communicate openly with them and make sure they are all on the same page regarding my treatment plans. With so many medical people involved in my life, not everyone agrees and one person can tell me to do something very different from another person. Don’t hesitate to ask questions and speak up for yourself if something doesn’t seem right.
2. Use Technology to Your Advantage There are many apps and online tools designed to help manage health information. I use a medical app to track my appointments, medications, and health records called MY CHART. I also have a continuous glucose monitor (CGM) that gives me blood sugar readings on my phone. I SHARE these readings with my medical team, my mom, and my partner. Being so complex, I gave my mom the job of managing my medications, research, and appointments. This way, I never miss anything important.
3. Prepare for Appointments Before each appointment, I make a list of questions I want to address. I talk with my partner and mom to make sure we have our questions ready. My mom takes notes and my partner and I listen. You can also bring your home medical binder and any medical records needed at that appointment. I find it easier to have everything up-to-date on MY CHART. That way everyone important to help me medically has it. Being prepared helps make the most of the time with my doctor and ensures I don’t forget to discuss anything important.
4. Keep a Medical Binder Keeping a medical binder, folder, or notebook lets my mom have special materials needed available, especially some of the older information. She takes notes in appointments she can refer back to. She becomes my partner and my cognitive translator when I do not understand something. Your binder can have all your important health information, including medical history, allergies, medications, important test results, and contact information for my health providers. Having everything in one place makes it easy it access information quickly during appointments.
5. Simplify Medication Management As I got more issues, I delegated medications to my care coordinator, who happens to be my mom. It can be someone you totally trust, or your in home nursing people I use a pill organizer that is sorted into four times a day. I only have one day of medications at a time to manage and my partner administers them from the box at the same time everyday. They help me keep track of what I need to take and when, especially on days I am not feeling well. They also have calendar reminders so they do not forget medical things I need every other day, every three days, and every ten days. No one said this is easy!
6. Utilize Support Services Don’t hesitate to reach out for their assistance. Also don’t be surprised if what you are allowed to help support you is limited or does not work. I have three care navigators that help my mom – Insurance Navigator, Dialysis Navigator, and a Primary Care Navigator. These professionals can help schedule appointments, understand medical bills, and navigate insurance issues.
7. Keep a Health Journal Maintaining a health journal to record symptoms, blood sugar levels, dialysis details, and any other health-related information can be incredibly helpful. This journal provides valuable insights into my health patterns and helps my doctors make informed decisions about my care. When my mom works with me she has a CARE BOARD. It is a white board where she writes anything about my cares, timing, medications, injections, food, reactions, next appointments. That way she can hand off to my partner when he gets home from work.
8. Take Care of Your Mental Health Dealing with complex health issues can be stressful. It’s essential to prioritize mental health. I see a therapist regularly and practice mindfulness and relaxation techniques to manage stress. Taking care of my mental well-being helps me stay resilient and better cope with medical challenges.
9. Plan Ahead for Emergencies Having an emergency plan in place is vital. I carry a medical ID bracelet with information about my conditions and medications. I also keep three days of medications available at all times. Make sure there is a list of emergency contacts and medical information in my phone and my mom’s phone. This preparation ensures that I receive appropriate care quickly in case of an emergency.
10. Stay Informed Being knowledgeable about my health conditions empowers me to make better decisions. I stay informed by reading reputable sources, attending support groups, and asking my healthcare providers for resources. The more I understand about my conditions, the more confidently I can navigate the medical system.
Simplifying the process of working with the medical system takes effort, but it’s worth it for the peace of mind it brings. By staying organized, leveraging technology, and building a supportive healthcare team, I’ve made managing my health more manageable. I hope these tips help you find your way to a simpler, more organized healthcare experience.
TODAY’S NOTE: “I handed everything over to my care coordinator mom to manage. My pile of paperwork is as tall as I am.” – In Solidarity, Liz
Red Shoes Rock 